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Woke up from anesthesia after ACDF with incomprehensible bilateral ring and pinky fingers

RegattaRRegatta Posts: 3
edited 10/26/2015 - 11:22 AM in Back Surgery and Neck Surgery
I have searched high and low and can not find anything similar to my experience. I had a C6-C7 ACDF with fusion and decompression 3 weeks ago after suffering an injury that resulted in narrowing of the spinal canal and pain and numbness along my left side. Met with surgeon approximately a month after the injury and a day after seeing the neurologist for an EMG (she told me I had nerve damage in the spine and based on the EMG and MRI, I needed to meet with a spinal surgeon immediately). The surgeon said a bone spur or piece of disc had broken off as a result of the injury and the disc ruptured, pushing the bone spur into the spinal cord. He said it had to be operated on immediately or I could risk further serious injury if anything else were to happen. So we scheduled the surgery for 5 days later. I have randomly thought in the past about how I would never want to go under anesthesia as the risk (however remote) of going to sleep and never waking up quite frankly scares the living hell out of me. I essentially just pushed this thought into the back of my mind and did everything not to think about it right up until I was in the hospital for the surgery. I am not a nervous person, but I definitely was that day. But my fiance was with me right up until I went under and everything pre op went smoothly. I guess I got so loopy as they put me under that I don't really remember being scared or apprehensive as I went to sleep.

So that is the background, and here is where I am desperate for some insight/opinions.

I literally woke up from anesthesia as they wheeled me out of the operating room (I think I opened my eyes as we actually rolled through the double doors). For one brief and very short lived second, I remember feeling a huge sigh of relief upon opening my eyes that I was awake, and I couldn't wait to see my fiance who was in the waiting room (the last memory I have before going under was fumbily trying to give her a kiss after they gave me one of the anesthesia drugs). I can't even begin to explain what I felt next, but it was akin to as if my pink and ring fingers on both hands were being electrocuted and lit on fire. The middle fingers experienced similar pain but in a significantly less intensity. I could not discern any pain in my pointer fingers or my thumbs, and I am pretty sure there was none, but I suppose if there was a small amount of pain, it was likely eclipsed by the adjacent pain in the other fingers. There was also some of the same pain in my right forearm and just above my left elbow but not as intense. I generally handle pain very well and have a pretty good handle on controlling my emotions/biting my tongue as freaking out is not going to fix a problem and keeping a level head is key to getting through something, but I pretty much lost it at that point. I yelled something along the lines of "my hands, my hands, something is wrong with my hands, it burns, what the [edit] is going on...". The doctors seemed confused and indicated that the surgery went extremely well and to give it a minute because it might go away. It wasn't something I could "give a minute", it was pushing me to the brink of insanity. Prior to that point in my life, even the most excruciating pain I had ever experienced would not be on the same planet as what I was feeling. Prior to that, I am confident that I could not have even comprehended that pain of that intensity was even possible. To make things worse, the pain was pulsating. It would briefly drop off for about a second or two and then spike to maximum intensity for 5, 10, or more seconds before dropping off for 1-2 seconds and repeating. The pulsating was something like getting stabbed with a knife repeatedly as opposed to getting stabbed once with the knife remaining. There was no escaping it or diverting my focus to try and be elsewhere, every spike brought it fully into the foreground and made it impossible to think about anything else. This cycle was not subsiding even once we got to the recovery room. The doctors said it was not typical and they were not sure exactly what was going on. I was in tears at that point and they were trying to give me drugs, but nothing was doing anything to help. Fentanyl, Lyrica, Valium, and Opiates with absolutely no results. At one point I asked if they could just sedate me, because I could not handle it any more. Obviously they were not going to do that given I had just undergone anesthesia, but that sure would have been nice to escape the pain at that point. I couldn't even feel any effect from the pain killers as it was like the intensity of the pain was sobering in a way. I am pretty sure they were working elsewhere though, because i do not recall incision or neck pain while in the recovery room. As everyone here I am sure understands, when you know how long a pain will last, you can try and mentally prepare yourself for dealing with it while it runs its course, but when you are in that kind of pain or even moderate to severe pain, and the doctors don't even know what is going on or if or when it will ever end, well that is downright scary and more or less heartbreaking.

They said I could remain overnight for observation, but when I asked if there was anything they could do for me, and they said no, I just wanted to be home where I could try and deal with the pain privately and have at least a chance of being somewhat comfortable. After a couple hours, the pain was not getting better, and we chose to go home since there was nothing more that they could do for me. We had gotten home from the hospital in the evening and I was up all night without a remote chance of being able to fall asleep. I think I was able to sleep for about 2 hours the next day mid-morning (thanks to the narcotics), but then awoke once again in unbearable pain. I would say the next 36 hours were the worst day and a half of my life. Between the pain, anxiety, and uncertainty, I couldn't even think straight. The pain and frequency of the pulses began to very slowly decrease and I was able to sleep on and off for about 2 hours at a time before being woken up by the pain in my hands. The narcotics helped somewhat with being able to fall asleep and they did help with incision pain and neck pain near the surgery location, but they did nothing for my hands. Its hard to place a rate on it, but it was improving slowly at maybe 10% decrease from day to day for the first 2 weeks (as in the 5th day was about 10% less painful than the 4th day, and the 6th day was 10% less painful than the 5th day, but I can really only assess from day to day as its hard to try and compare day 3 to day 8 for example...). The problem is, even after 3 or 4 days when the pain had reduced considerably, it was still then only reaching a level that I would call 10 on the 1-10 scale. Where it was at before that isn't appropriate to even try and put on a scale to quantify, because those numbers are not tangible. Somewhere around 2 weeks post op, the pulsing became much less frequent, but a constant pain remained, and extreme hypersensitivity to touch, movement, or cold air/water. The pain has leveled out now and does not seem to be decreasing much at all. I do thank God that it has decreased as much so far as it has, because if it had remained where it was at, I really don't know what I would have done or how I would even be able to functionally live like that. The pain is constant but is bearable now. I try not to think about whether or not it will be permanent and just try and avoid thinking about how long it will be like this. My thumbs, pointers, and middle fingers being ok helps me to do some things to get by for now (like typing this post). But trying to stick my hands in my pockets, make a fist, shake someones hand, turn a door knob, those things are all still very uncomfortable. One other thing to note is that putting my hands under really hot water or submerging them in really hot water brings a huge relief from the pain while they are in the water. The hot water obviously hurts, but its like it dulls the nerve pain and that relief is almost euphoric for a moment. Cold water is quite a different story, washing my hands with room temp or colder water hurts like a [edit]. It was windy the other day, and even just wind blowing on my hands hurt like hell.

Alright, so long post, but it would be really amazing to hear from anyone who has any clue what could be going on or from someone who experienced the same thing. I fully understand that I need to see a medical doctor to get an actual diagnosis, and I will do that when I see the surgeon for the follow up in a week. I have talked to his office several times since the surgery, and they are aware of the situation. Any information you can provide will be taken as friendly advice and would be very much appreciated.



  • Well....I can somewhat relate, but not quite the same. My best un-formally-educated guess is that you have some nerve damage from both the injury and the surgery and that's the pain you are feeling because it is exquisite in it's scope and uniqueness. I had surgery on my L5-S1 and when I woke up, I couldn't feel my right foot (everything had been left sided before) and my right foot was on fire. It was horribly sensitive to the sheets touching it, putting on socks, the softest cat ever rubbing up against it...you name it, it hurt like a horrendously severe sunburn all the time. I would also get the throbbing, shooting, someone-jabbed-an-ice-pick in my toe pains at random moments. Not fun stuff.

    Like you, narcotics didn't help at all. Gabapentin at the highest dose didn't touch it. Surgery didn't fix it for me as I had some of the nerve pain before, but it was worse in my foot after surgery. The only thing that has helped me was Lyrica and that takes a good 2-3 weeks to build up to a therapeutic level in your body. I know you said you tried it, but did you give it a few weeks and adjust dosages? Same for Gabapentin (which is a lot cheaper and works for a lot of people.)

    I sit here a little over a year from that surgery and as I type, my foot is slightly burning and uncomfortable (almost always, I've got probably permanent nerve damage) and it never feels "normal", but it's livable. I wish it didn't bug me through the day, but I can honestly say it's usually more of a nuisance than severe pain and so knowing that it has been and could be worse, I'll take it.

    I hope you find some answers. My guess is that you've just got a lot of damage and the surgery irritated the nerves more, so it's going to take time to heal completely. Did you try any steroids? That might also help get you over the hump. Hang in there and know that there is life going forward.
    Left leg radiculopathy/sciatic pain
    L5/S1 microdiscectomy - May 30, 2014
    L5/S1 microdiscectomy - Aug 14, 2014
    L5/S1 TLIF - Sept. 24, 2014
    Left-side screws/rod removed along with bone fragment Dec. 29, 2014
  • Thanks for the response, it sounds like the pain in your foot is the same type of pain. I wonder what causes it to be bilateral vs just one side. I have found other people online that talk about similar type pain in one hand, one arm, one foot, etc, but I am not seeing anyone that had is bilateral.

    Like you, my preop issues were on my left side. I had throbbing and burning pains that would shoot down my left shoulder and left leg, I had constant numbness down my left side, pain in my left foot, numbness in my left butt cheek and pain in my buttocks, left hand was very weak. My left hand would tremble as well and I was constantly dropping things (2 cups of coffee dropped within a couple days is when I realized it, because I had never dropped anything like that ever before...)

    I was given a steroid pack the day after the surgery, but since I took it over a 6 day period, I am not sure if it contributed to the healing process or not (there were no abrupt improvements from one day to the next).

    I will talk to the surgeon about the Lyrica when I see him for the followup. As it is now, the pain and sensitivity is identical to 2 days ago when I made the first post. I am dropping things now with both hands, keys, tv remote, you name it. It seems if I am holding something in my hand that is under a couple pounds and I am not specifically focusing on holding onto it, I have the tenancy to drop it if I am going to set it down or moving my hand (I dont just drop something if I am holding it and standing still, usually happens when my hand is moving...).

    Hopefully the surgeon has some insight and doesnt think it is permanent, but I am just going to try not to think about that until I actually talk to him and get his opinion. If it is permanent, I will cross that bridge when I get there, but I am still very very thankful that it has improved from where it was right after and in the week that followed the surgery. I am right there with you on the "livable" aspect of it, it could have been much worse, and it gives me a new found respect and empathy for people that have legitimate permanent nerve damage that is inescapable. Before the accident, I was pretty skeptical of people that make wild claims of debilitating nerve pain. Obviously there are those out there who are completely full of it and just want to milk the system, and I would guess that is not a small portion either, but if there are people out there who deal on a constant basis with the kind of pain I had after the surgery, my heart genuinely goes out to them, because I don't see how anyone could live like that...
  • I'm sure it was on this site I read someone's story where they also woke from surgery screaming in agony with burning in little finger and the day after they were taken back into theatre and operated on again....
    I will try to find it and paste a link....
    Kirsti x
  • I've pasted her post........"Dealing with life after unplanned procedure.
    I'll start with what I know from the beginning and work from there, please be patient, this is all new to me.
    I'm currently in the hospital (10/15/15) and have been since my initial surgery (10/6/15).
    In June of this year, I went to my PCP and with a chief complaint of lower back/right hip pain. She started me on steroids and sent me for an MRI.
    My results showed severe stenosis in my lumbar spine (with my spinal canal opening being less than 3mm as opposed to the norm of approx 12mm) as well as degenerative disc disease, severe compression etc. I was immediately recommended to a neurosurgeon who decided after seeing my results wanted to perform surgery , but first wanted additional MRI'S to see if there were other problems in addition to the original lumbar issues.
    I found out my spinal cord was already compromised, there was no room as well as having permanent damage already, calcified mass of approx 7mm on spinal cord. My cervical spine was deemed an asap requirements and surgery was scheduled. I was told it would be in and out and the only reason I wasn't treated as outpatient was because of the distance I live (almost 2 hours from hospital) I had an ACDF of the C5-c7 double fusion,bone removed, plate installed. Immediately leaving recovery, to go to my room, the first 2 fingers on my right hand were screaming. No pain in my neck from surgery ,just the 2 fingers that felt like every nerve ending in my body was sticking out of my fingertips.
    My neurosurgeon kept me, pumping steroids, hoping spinal cord swelling went down etc. I would wash my hands and just the water touching my fingers would drop me to my knees.
    We waited...finally Sunday, after my surgery Tuesday, he decided to go back in, posterior this time. Surgery lasted about 3.5 hours, with me receiving a cervical laminectomy and fusion of my C-3,C-4,C-5,C-6,C-7 AND T-1...totally diffent this time. From no pain to excruciating. But as soon as I woke up and checked my fingertips and found they didn't hurt, I cried like a baby. A little tingle but that seemed normal. Still in the hospital, and now starting yesterday, a couple days after surgery, the pain is returning in my fingers.
    Not sure what's going to happen. BUT in a month, on November 13th, I'm scheduled for 2 more surgeries, lumbar and thoracic spine. I believe L-3 through S-1 laminectomy, bilateral foraminotomies (?) L-4/L- 5 microdisectomy, decompression, etc with other decisions made intraoperative, not knowing exactly until he gets in there.
    I'm not sure what's going to happen from here on out. The plan has always been to do the lumbar /thoracic surgery within 4 weeks of the first cervical surgery, even though there was another unplanned more invasive surgery a few days ago.
    What do I expect? I'm dying now, are my fingers going to get better? I know this all HAS to be done, but now recovery is extended even longer because of the unplanned surgery.
    I'm not even sure what I'm asking. This is all so new and frightening to me. An overnight stay has now turned into me being on my 8th day here. What can I expect in the next month, between now and the lumbar/thoracic surgery? Anything is appreciated. Time, input advice. As soon as I started learning about needing surgery, I joined this site and started using it as a go to for learning. This is my first post and I apologize for it turning into a novel and all the meds have me a little loopy. (Currently on dilaudid, percocet,neurontin, Valium, antibiotics etc )
    Thanks so much in advance for your time. I understand I'm not asking dr advice, just personal experience."

    Maybe you can inbox her for more info? Hope this helps :)
    Kirsti x
  • Dear Regatta,
    I know that I've found your post much later but I'm so happy to find something, anything, about this topic!!! I can COMPLETELY relate, with only one exception. My pain was not pulsing or diminishing in intensity. It was consistently horrendous. Hot water is my friend, cold water the enemy. Pain relievers did not work and I could not use my hands for two weeks! The good news is that the pain has finally diminished enough to be bearable. I haven't found much info on this, but discovered one paragraph in an article which states that after the surgery the nerves are healing and the moderate version of these symptoms are normal. In our cases, the pain was extreme, which one of the attendings  in the hospital said is rare, but happens. I hope that by now you have experienced some relief and I hope that you continue to improve daily.

    best wishes,
    redhanded (because I surely felt my hands were on fire!)
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